E-health. Patterns of use and perceived benefits and barriers among people living with HIV and their physicians. Part 1: Information retrieval on the Internet and social networks

Objectives

To identify patterns of use, perceived benefits, and barriers among people living with HIV (PLHIV) of online searches for health information and via social media.

Methods

Online multicentre observational survey (October 15th–19th, 2018).

Results

Study participation was accepted by 838/1377 PLHIV followed in 46 centres, of which 325 (39%) responded online: 181 (56%) had already used the Internet to search for health information; 88/181 (49%) on HIV infection and 78 (43%) on nutrition. These 56% were characterised by a higher educational level (OR = 1.82 ± 0.50; P = 0.028) and more often consulted other specialists (OR = 3.14 ± 1.26; P = 0.004). A subset of 87/180 (48%) PLHIV had changed the way they looked after their health based on their online research, and were more often in material/social deprivation (P = 0.02) and diabetic (P = 0.02). A small subset of 19/180 (11%) had already asked or answered a question on a forum; these people tended to be women (P = 0.03) in material/social deprivation (P = 0.009). 296/322 (92%) PLHIV trusted their physician whereas only 206 (64%) trusted information sourced on medical websites. 238/323 (74%) PLHIV expected their physicians to recommend websites if asked, whereas only 23/323 (7%) had actually been given this guidance.

Conclusion

More than half of PLHIV surveyed had already searched for health information on the Internet, and one in two had changed their behaviour based on the online search. PLHIV did not see the Internet as an alternative to physicians but they wanted their physicians to guide them on how to find quality health information to better self-manage their condition.